RECRUITING

The Duchenne Registry

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

The Duchenne Registry is an online, patient-report registry for individuals with Duchenne and Becker muscular dystrophy and carrier females. The purpose of the Registry is to connect Duchenne and Becker patients with actively recruiting clinical trials and research studies, and to educate patients and families about Duchenne and Becker care and research. At the same time, The Duchenne Registry is a valuable resource for clinicians and researchers in academia and industry, allowing access to de-identified datasets provided by patients and their families-information that is vital to advances in the care and treatment of Duchenne. The Duchenne Registry is a member of the TREAT-NMD Neuromuscular Network.

Official Title

The Duchenne Registry: An International, Patient-Report Registry for Individuals With Duchenne and Becker Muscular Dystrophy (Member of TREAT-NMD Neuromuscular Network)

Quick Facts

Study Start:2007-10
Study Completion:2047-10
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT02069756

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:Not specified
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * Diagnosis of Duchenne or Becker muscular dystrophy; Manifesting female carriers and asymptomatic female carriers also included in registry.
  1. * Diagnosis of any other type of muscular dystrophy (including limb-girdle muscular dystrophy).

Contacts and Locations

Study Contact

Ann Martin, MS, CGC
CONTACT
888-520-8675
coordinator@duchenneregistry.org

Study Locations (Sites)

The Duchenne Registry / PPMD
Washington, District of Columbia, 20005
United States

Collaborators and Investigators

Sponsor: The Duchenne Registry

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2007-10
Study Completion Date2047-10

Study Record Updates

Study Start Date2007-10
Study Completion Date2047-10

Terms related to this study

Keywords Provided by Researchers

  • Duchenne
  • Becker
  • Muscular Dystrophy

Additional Relevant MeSH Terms

  • Duchenne Muscular Dystrophy
  • Becker Muscular Dystrophy